Tuesday, April 20, 2010
Below is a post from a blog entitled, “The Great Adventure,” by a lovely, devoted and determined mother named Lindsay. I came across her blog thanks to a Google Alert which recognized Lindsay’s mention of my book “Saving Henry.” Shortly after I read the post, which was yet another piece of evidence about the importance of writing Saving Henry, I got an email from Lindsay which I will treasure always.
Here is Lindsay’s blog post from Sunday, April 18:
Ever since I first heard about having another baby with the same HLA as James Thomas so he could receive a bone marrow transplant, HOPE filled my heart. While a bone marrow transplant is the last thing I want for James Thomas the possibility of it can only happen if he has a sibling who is a perfect match to be his donor. As you all know James Thomas is our only child so we have to use modern medicine to guarantee this for him. I originally said that I wasn’t going to share this part of our journey on our blog due to the uncertainty of everyone’s reactions. But after reading “Saving Henry” and “The Match” I believe being open is the best way to go for James and me. There is no way I will be able to explain everything or do a good job at it but I will try to do my best to share our story with you. My hope is that in the rare chance you find yourself in the same situation or meet someone who has to go down this path then maybe I can be there for them. I am so thankful for the people who have traveled this road before me and are open about it. It makes the process bearable.
So how do we ensure that we have an exact HLA match for James Thomas? Along with MANY prayers we will use IVF with PGD. James and I first heard about having another baby back in October when we first learned that James Thomas had Diamond Blackfan Anemia. A family friend of James’ is a doctor in Washington DC and she suggested that we try to get pregnant right away. Then in November, I traveled to New York to meet with the experts in DBA and they told us about IVF with PGD. Basically, you go through the same IVF process that family’s who have trouble conceiving go through. When the embryos reach day three of development a cell is removed from each and sent to Genesis Institute in Detroit where they will test them. Then they will implant the embryo or embryos that match James Thomas’ HLA. The reason we have chosen not to try naturally is because there is only a 25% chance of a sibling being a perfect HLA match. They will also check each embryo for the genetic mutation that James Thomas has. Based on James and my genetic testing they don’t anticipate any of the embryos having the DBA mutation but we are at a higher risk of this happening since we have already had one baby with this mutation. My initial fear was what do we do with the other embryos? It would be devastating to destroy the embryos that have the RSP 19 mutation. What if we have a lot of embryos, do we freeze them all and implant them later? Can James and I really have 6 or 7 children or on the other side could we destroy the embryos that are not HLA matches? This is the side of PGD that is very difficult. This is where I pray that you never have to even think about these kinds of things. But, from all the research I have done we would be blessed to have that many embryos because families try over and over again and some are never able to conceive a child and the ones that do feel blessed beyond words when it finally happens. One mom told me I would be lucky to have extra embryos because she never did. In fact it took her over a year of attempting to finally have her daughter (which she gave birth to a few months ago!!!). So, I do not worry anymore about that problem. I trust that God will be all over this and what happens will happen. I just pray that it won’t take James and I several attempts to get our precious baby.
We have found our fertility doctor who is going to walk us through all of this. I was nervous about him at first, mainly because I have never had a man doctor and I wasn’t sure he would be as overly compassionate and cheerleader type which I know I need. But after two consults and being assigned a nurse I know he is where we need to be. We are using Dr. Hughes with Genesis Institute to conduct the PGD. There are only two places in the US that do this and he was the pioneer behind PGD. Tomorrow we will be receiving our DNA swabs. All three of us, plus our parents have to send in swabs with our DNA to Genesis, then they will use them to make a probe to test the embryos. The probe must recognize James Thomas’ HLA in all the embryos. Once the probe is made, then we will be able to begin the IVF process. Dr. H wants to do blood work and some other prepping tests while the prob is being made. Hopefully, we will be able to begin those this week. It is a lot to process and learn but we are so thankful that medicine is able to help us grow our family and at the same time do everything possible to ensure that James Thomas lives a long, healthy life. The author of Saving Henry was asked what she says to people when they ask her, “How could you do all of this?” She said when she looked Henry she sad to herself, “How could you not?” That is our philosphy here: How could we not do everything we can to cure James Thomas no matter what the financial or physical pain it causes us.
We ask for your prayers through out all of this. As much as I do believe in medicine I know that God is in control. He has a PLAN for our family and we want Him to be all over this entire process. I always try to find a song that really hits home with what we are going through. So, this is my song for IVF with PGD. Hold Us Together by Matt Maher I will try to figure out hot to attach a link to hear the song. Hope this worked.